Wednesday, August 19, 2015

Autism Chronicles: Still Fighting

I'm tired... already exhausted from fighting a fight I thought I was done fighting years ago. 

My child has autism. There are fleeting moments of "normal" every once in a while that allow me to forget this very fact. Like today when after dinner, Will and I were walking to my car. I put my arm around his shoulder. He responded by putting his arm around my waist. Normalcy. An embrace between a mother and son. Of course, after about a nanosecond I realized how special that moment was - that my son with autism responded to my touch by reciprocating with his touch - and it wasn't so normal anymore. Autism. I'm reminded of it and the impact it's had on our lives - every second of every minute of every hour of every day.

When Ryan was playing in the NFL, we had THE BEST insurance - unless we needed autism coverage. Our policy through Cigna would pay for a medical evaluation for autism, but specifically and explicitly excluded coverage for autism treatment including speech therapy, occupational therapy, physical therapy - pretty much any therapy you can imagine a child with autism might need. After being pre-approved for speech therapy, we got a denial letter for $5,000 worth of services. We had to fight to get the services (that had been pre-approved) covered. If anything, we went out of our way to prove Will needed these services despite having autism. We eventually got the speech therapy covered... his "developmental delays" were clearly caused by the repeated "otitis media" (a.k.a. ear infections) Will suffered as a child. But it wasn't because of autism, because if the delays were caused by autism, therapy wouldn't be covered. 

Unfortunately, our NFL insurance coverage expired (yes, it actually expires contrary to what a lot of folks think) and after paying for 18-months of unconscionably expensive COBRA coverage, we were forced to find a new policy. I was careful to seek out a plan that would continue to cover the ongoing therapy Will was receiving at Easter Seals every afternoon. Coverage under our new policy was working out great (it started in March) until we got a letter saying that Will's services were being audited. Even though Will has been receiving these services for a while now, we are going to have to prove that they are "medically necessary" (buzz words) in order for them to be covered.

Although Will has been identified as a child with autism for educational purposes (annual ARD meetings - another great reminder that your child has special needs), he has not undergone extensive (and expensive) medical testing for autism. Remember, we'd avoided such testing in the past knowing that had Will been diagnosed on the spectrum, his therapy wouldn't be covered. But now, all indications suggest we'll have to seek out a developmental pediatrician, neurologist or psychologist (or a combination of all of the above if we really want to cover our asses) to get a medical diagnosis so that insurance will cover Will's therapy. And we'll have to go back to said specialists regularly to maintain that diagnosis because the need for continual therapy has to be justified. And we'll keep getting letters from the insurance company asking us to prove said therapy is necessary - our policy states Will's services can be audited every three months. So even though Will has autism, even though there is no cure for autism, even though there is state law requiring insurance companies to cover autism therapy in Texas, even though... we now have to expend tremendous resources (time, money, etc.) proving that Will still has special needs... that he has autism... and that our lives are anything but normal.


I'm tired. Already.

(An aside: I've chosen not to mention our new insurance company by name yet because our issues with them are ongoing and I don't want to do anything to jeopardize coverage for Will's therapy. But this company has apparently raised some red flags in the autism community because of it's denial of services. If I start referring to the company by name, you'll know things have gotten worse.)

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